Maja (pronounced Maya) is a very strong-willed, opinionated little 2-year-old. She is a fighter and all the doctors, nurses and hospital staff say she’s a better patient than most older kids and adults and are always impressed with her. She likes to do things on her own as much as she can. She absolutely loves playing with her brother, he makes her so happy and we are so blessed they have each other. Her brother always makes her laugh. With an older brother, she prefers to play with him, with cars, trucks, and trains, over dolls. She loves to dance and sing too.
Maja was diagnosed with Wilms Tumor on January 27th, 2022. As a mother, I knew something wasn’t right a couple of weeks after her birth but the pediatrician always just said that it was colic. She was a very fussy and unhappy baby. As she got older her unhappiness turned into unwarranted random tantrums. Now we know she was trying to tell us something wasn’t right – 2 to 3 weeks before the diagnosis, she really started to not feel good. The week before, she didn’t want to walk and just wanted to lay on me and sleep. We saw a couple of doctors that week before one finally sent her for an ultrasound on 1/27 and that was the day they discovered her tumor. It had taken over her whole kidney, which was 3 times the size of a normal kidney and it had ruptured putting resulting in stage 3 cancer. The same day while being admitted to the hospital for cancer, her body went into shock, and she was diagnosed with end-stage renal disease.
Maja has had both kidneys removed, 25 rounds of chemo, and is on hemodialysis 4 days a week. She has also endured 7 days of radiation to her entire abdomen. She has had many surgeries as well (HD catheter, PD catheter, chemo port, 2 nephrectomies, and a couple of PICC lines) and will have many more in the future.
Maja is on a strict renal diet where she has a daily restriction on how much sodium, potassium, and phosphorus she can have. In addition, she has a strict daily fluid limit of 500mls. She is not able to go swimming, take a bath or shower, or run through a sprinkler because she is not supposed to get her hemodialysis catheter wet. It makes summertime hard because we’d have to sneak off so our son could do fun water stuff while she stays home.
The biggest struggle for our family is trying to juggle all her treatment visits along with having a 4-year-old at home. We have been blessed to have my mom who has been able to stay with our 4-year-old while Maja is at treatment so that dad could keep working. Also, I, the mother, had to stop working so that I could take her to all her treatments and procedures. We haven’t spent time with many family or friends to make sure Maja stays healthy and we can get through her treatment safely. We continue to mask, even our 4-year-old at school. As a parent, we sometimes feel like her little brother is missing out on the fun but thankfully at his age, he doesn’t know this yet. However, it has made him and Maja close because when she’s not getting treatment, they are together playing.
We as parents are just so impressed with her. For all that she is going through she is such a strong little girl.
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